She would simply hold on to me for support: a husband cares for a wife with dementia

Ramana Rajgopaul, a successful professional manager, gave up his lucrative career to become the caregiver for his wife after multiple cerebral and cardiac infarcts. His wife has since passed away. In this interview, he describes his experiences and emotions as his wife’s caregiver. [note]

Dementia Care Notes: Please describe the symptoms and state of your wife, which led you to give up your career.

Ramana: My wife’s short term and long term memories were shot to pieces. Both would work some times, but most times, they would not. She could not recollect names, places or events and if some one explained, she would pretend to understand, but it was just that, a pretense. The only two people she recognized and was comfortable with were our son and me and here too, the past had no meaning or resonance for her. Simple things like taking medicines and prescribed food were a problem because she would not remember if she had taken or not. Anything or place out of the familiar would result in panic attacks for her and if either my son or I was not around, she would simply go into a shell and it would take hours to come out of that shell.

On a few occasions, she went out to walk on her own, when I was not around, and even within our own locality, she got lost. Luckily on all occasions, people who recognized her brought her safely home.

Although our house is in Pune, I was at that time pursuing my career in the South, while my son and daughter-in-law lived in Pune. My wife found living in the South with me difficult because she simply could not manage the language and did not like being alone at home when I used to work 10 to 12 hours a day. She had therefore returned to Pune to be in her own home and live with her son and daughter-in-law. I would come to Pune whenever I could, for weekends or holidays, or because of emergencies.

When, after my wife’s infarcts, it became clear that she needed more care, we tried using live-in paid help for her, but she rejected this caregiving alternative by simply withdrawing into her shell.

When, after my wife’s infarcts, it became clear that she needed more care, we tried using live-in paid help for her, but she rejected this caregiving alternative by simply withdrawing into her shell and I decided to wind up my bachelor set-up in the South and return to Pune to be with her. I could not leave the care entirely to my son as he had his own career and marriage to manage.

Dementia Care Notes: How did you phase out of your career into this caregiver role? What was the response/ reaction of your colleagues, friends, and relatives? How did you cope with it?

Ramana: My employer was a friend who knew the problem and had met her on a number of occasions. He was a great help when she had her first infarcts and knew the problem. When I finally had to quit, I simply had to explain to him the situation I found during my brief weekend visit to Pune. Being a man of great compassion, he reduced the notice period and relieved me in two weeks after I handed over to a selected relative of his. I played a consulting role on the telephone for four months afterwards for which, too, he made generous payments.

Dementia Care Notes: How did you equip yourself for this caregiving role? Please describe the sort of work involved, and how it changed across the years, as she deteriorated.

Ramana: There was nothing that I would have NOT done for her.

I simply asked her cardiologist and neurologist what I could expect and what I would need to do and did that. Luckily for me, her problems were essentially to do with her heart and there was no further deterioration in her physical or mental condition. I just had to assist her in medically managing her condition.

Caregiving involved seeing that all possible comforts were provided to her. For example:

• Seeing that there was always hot water available in the bathrooms, beds made and her clothes laundered and shelved, wholesome and nutritious food provided on time, etc.
• Seeing to proper administration of medicines in the correct dosage and at specified times.
• Arranging for, and accompanying her to pathology tests and doctors’ appointments. Arranging to fill in prescriptions.  
• Accompanying her for, and urging her to do physical exercise as advised by the physicians.
• Answering and making phone calls to friends and relatives who wished to keep in touch with her.
• Seeing that she did not face any embarrassment due to lapses in memory, particularly with respect to names and places when people visited.

In short, I did everything I felt was needed to keep her healthy and happy.

Dementia Care Notes: Was your wife aware of the nature of her problem, and how it would progress? How did she respond to it?

Ramana: On some occasions, she would be aware that she had problems with both her physical and mental condition. On others, she would be confused. And so, she simply allowed me to run her life. I do not think that she ever thought that her condition would deteriorate. When she could not walk on her own, she would simply hold on to me for support and finish her quota of walk.

I believe that she knew that she was totally dependent on me but that did not bother her, except when I was not around.

Dementia Care Notes: Did you face situations where the ignorance of others caused pain or embarrassment to you or your wife?

I was always around for her to avoid the embarrassments…

Ramana: Fortunately for me, the people who mattered in our lives, knew that there was some problem and treated her with the same affection and regard that they had for her before her infarcts. I was always around for her to avoid the embarrassments anyway.

Dementia Care Notes: Please share some instances of isolation you faced because of either the caregiving work, or poor understanding of your situation by others. How did you handle it?

Ramana: I had to completely overhaul my life style. I had to give up going to my club, going out with friends or visiting them, weekend outings to nearby hill stations etc. That was the most difficult part as I was a gregarious bon vivant. Friends did not understand then, nor have they understood till date, as I used that period to develop a more peaceful and quieter, less expensive lifestyle. That period also saw me develop further into my spiritual pursuits and I am better off for that.

Dementia Care Notes: Seeing a spouse lose her memories is sometimes likened to losing a part of yourself, and your dreams of a happy retired life together. What has been the emotional impact of it on you?

Ramana: Our retirement plan was to travel within and outside India at first and then to retire to a small farm-house. Naturally, all that had to be given up as she was simply unwilling to get out of her immediate comfort zone/familiar environment. Many things that I could not have shared with her during my hectic career life had to be permanently kept away from her as she simply could not relate to any of my stories from those experiences. This was frustrating, as I could not make my peace with her for the years that I was away while she ran the household and our family affairs.

Today, without her, I simply do not have the motivation to revive those plans. I have also taken on a new caregiving responsibility for my father and so, it looks like that the plans have to be permanently given up. I do not think that there will be any great emotional impact on me because of that, as I am a different person now than the person I was before my wife had her infarcts.

Dementia Care Notes: As your wife deteriorated, were there some moments when the measure of the loss hit you particularly hard?

Ramana: In all honesty, no. I enjoyed our time together after all those years of spending so little time with her and was content to be around for her. As I had said earlier, I changed.

Dementia Care Notes: Please share some special, tender moments when you connected deeply with her in spite of her dementia.

Ramana: Every evening we used to go for a walk to the local park. We would sit together and our friends would come and sit with us after their walks and we used to have a lot of fun at each other’s expense. While mostly she would not understand what was going on, there were occasions when she would participate and those were special moments for all of us. Escorting her to the park, walking along with her during her walk for exercise, and returning with her back home, were all tender moments. They were very fulfilling and enriching.

Dementia Care Notes: When you were actively caregiving for your wife, what sort of mechanisms did you use to stay physically and emotionally fit for the caregiving?

Ramana: Daily Yogabhyas and meditation. I practice Vipassana and these two activities kept me physically and mentally fit. As odd as it may sound, my daily prayer sessions helped too.

Dementia Care Notes: You handled your wife’s caregiving along with other family responsibilities, especially the care of your father. How did you balance and prioritize these?

Ramana: My father came to stay with us just four months before I lost my wife. The only problem was that she often could not recognize who he was. When my father came to live with us, my wife and I moved out of our ground-floor bedroom to an old office room, so that my father could live on the ground floor in our old bedroom. My wife found this very confusing, especially as she often forgot who he was.

My father was and continues to be quite physically independent and so I did not have to do much for him till his fall and fracture much later. Problems of prioritization between care for my father and my wife never arose as my father understood my priorities quite well. It is a sense of déjà vu now with my father’s memory playing tricks on him!

Dementia Care Notes: When your wife passed away in March 2009, your caregiver role ended suddenly, and you suffered the loss of a life partner. How did this impact you, and how did you emerge from it?

Ramana: I am still living with that impact.

I knew my wife as a friend for eight years before our marriage and we were married for forty years. We had a very strong relationship and suddenly to be without that anchor as it were, was initially quite difficult. My siblings, nephews and nieces, grand nephews and nieces, my wife’s cousins, all came at different times to, shall we say, cheer me up and get me back to normal.

I have a major surgery scheduled a few weeks from now. As my big surgery problems loom ahead, I remember that, on all four occasions earlier when I needed surgery, my wife was by my side during the operations while simultaneously running our household. I will miss that this time around.

I have got over the loss but I can’t say that I do not miss her.

Dementia Care Notes: Looking back now, what advice do you have for other spouse caregivers?

Ramana: It has been my experience that each case is different. The extent of the dementia has different ramifications on the depth of care giving.

I learnt to handle ‘whymeitis’ by spiritual pursuits and discussions with my Vedanta Guru. It helped me, but I do not know if I could give that as an advice to all care givers.

I was fortunate in that my experience was less of a strain for us as my wife was not violent or totally helpless or difficult. So, the advice that I can give is likely to be related to experiences similar to mine, and that would be to develop, if one does not already have it, a sense of humour and not to take oneself too seriously.

I learnt to handle ‘whymeitis’ by spiritual pursuits and discussions with my Vedanta Guru. It helped me, but I do not know if I could give that as an advice to all care givers.

Dementia Care Notes: What is your wish-list about changes around you, in people, in society, in employment environments, to better support persons thrust into a caregiving role for a person with dementia?

Ramana: Only one item on the list. Development of support groups everywhere like AA, NA, Alanon etc., for caregivers. Perhaps something like Caregivers Anonymous!

I am available 24/7 to any caregiver, who wants a sounding board, a sympathetic ear, counsel, and in the case of people in Pune, and/or any other help that I can render. I would consider it a privilege to be of help to other caregivers rather than treat them as invaders of my privacy.

I can be contacted via email – rrajgopaul@gmail.com.

Thank you for sharing your inspiring story, Ramana!

[This is part of the caregiver interviews on this site. View the list of all caregiver interviews].

Note. This is a personal interview. The situation and experiences described are specific to the interviewee, and the interview is not intended to be seen as a general representation of persons with dementia, their families, the care environment, or professionals. Every patient, every family is different and so is their experience.